Wednesday, 20 May 2009

Speak Easy

I have a new on-screen keyboard I am trying out, it has lots of fancy predictive text facilities that should, in theory, speed up my typing. I can but give it a go.

Yesterday I was visited by a speech therapist who came to remind me how to talk, which was very useful because it is the kind of thing I might forget left to myself. Apparently I have a tendency to Dysarthria, which means slurred speech, something I used to achieve with a bottle or two of wine but now comes naturally. Who says I'm not making some progress. She asked me it I wanted to consider using a voice amplifier. This would mean wearing a head microphone and a small speaker but would make shouting at the kids easier. The problem, as I see it, is that the small speaker looks as though it was designed circa 1979 in beige plastic, and lacks even a retro nostalgia. Imagine an ipod speaker designed by Tupperware.

The speech therapist gave me a helpful advise sheet which includes useful suggestions such as “ Do not carry on talking when your breath has run out. Stop, breathe in and carry on.“ I think you will agree that that is very sensible and I will seek to do just that.

Until next time... Breathe in, breathe out.

Tuesday, 19 May 2009

Bionics And Gaffer Tape

"Steve Deal, writer. A man barely alive. Gentlemen, we can rebuild him. We have the technology. We have the capability to build the world's first bionic man. Steve Deal will be that man. Better than he was before. Better, stronger, faster... so long as Polly has enough gaffer tape."

Last Monday came the culmination of months of phone calls, meetings and letter writing when the man from Neater Eater came to fit my Neater Arm. The device fits to and is powered by the electric wheelchair and provides an exo-skeletal arm support that moves up and down. For the first time in months I can feed myself again.

The arm cost £3000 and has been entirely funded by my local authority, though thank you to everyone who offered to contribute towards it. The local health authority has little pots of money set aside for such devices and if no one claims them they get absorbed for other purposes. It would have been easier and quicker to pay for it myself but it became a point of principle.

So, after months of waiting, hours of fitting and calibrating, and £3000 later I have an arm that goes up and down. Mind you, it wouldn't even do that if Polly hadn't been on hand. The problem was that the arm kept getting snagged on the wheelchair backrest. We'd already had it altered but it still kept getting stuck. Step forward Polly with a paintbrush and a roll of gaffer (or duct) tape. She cunningly attached the paintbrush, using the tape, to guide the arm around the problem. Eventually the paintbrush snapped but Polly was ready with a length of broomstick. Is it any wonder I married her.

The arm is brilliant, but as with all things connected to my disability it is a compromise. It limits my arms movement backwards and forwards somewhat and because of the sling that supports my forearm it makes writing even harder than it already is. Inevitably it will affect the number of blog posts I can write for the foreseeable future until I can devise yet another strategy to speed things up.

In the meantime, we took the boys to see the new Star Trek film which is absolutely fantastic, certainly the best film I've seen in a long while. It was hugely enjoyable and now both boys are running around yelling “Phasers on stun!” and doing impersonations of Simon Pegg doing an impersonation of James Doohan doing an impersonation of a Scotsman shouting “she's breaking up, Captain, I no ken hold her.” As a bona fide Trekkie it makes my heart sing with joy and dilithium crystals.

And for once I can raise a glass to you all, literally as well as figuratively. Live long and prosper.

Tuesday, 12 May 2009

Quiz Night

Which planet, apart from Venus, has no moon? Who, because of his smallpox vaccine, is known as the father of immunization? Name all seven colours of the rainbow. Who illustrated A.A. Milne's Winnie The Pooh? Who led the peasants' revolt of 1381? Which artistic movement was Monet part of? What is the chemical symbol for Tungsten?

Saturday night was Quiz night, a fund-raising event at the school. I love quizzes and become insufferably competitive at the merest hint of one, so this was an evening I had been looking forward to. Inevitably we were running late so had to gulp down tea before whizzing over to the school hall on foot and wheel.

The quiz was excellent, with a good balance of questions, and we had a good team comprising of an airline pilot, social worker, paramedic and someone in publishing among others. Our table was covered in crisps and snacky type things as well as wine and soft-drinks. Unfortunately I was beginning to get bubbly in the chest so the joyous prospect of eating high fat content potato based nibbles was diminished for me. After the first couple of rounds it was clear that we were outclassed by Table 5 who were answering correctly, on average, a question per round more than we were. I discreetly surveilled them, looking for evidence of iPhone internet connection, but it appeared they were just clever and not cheating. Rats.

As we passed through Food and Drink, Music and Sport I felt my head begin to swim as the bubbling in my lungs required me to cough more and more. By the time we entered into the History round Polly was suggesting we leave, or at least that she pop home to get the cough-assist machine. William Wallace I snapped. Robert the Bruce someone countered. Who led the Scots at bloody Bannockburn? Little red dots floated around me as I tried to order my Scottish battles. Bruce, I conceded. No I was not going home and no I didn't want Polly going to get the cough-assist machine. The second she left we would be faced with a series of questions on nursery rhymes or balloon modelling or something.

The final round, General Knowledge, came at last. We were in a good position to take second place, Table 5 having romped away with it by knowing who designed the Spitfire, but we needed a good round. Could I remember the name of the fish, previously thought to be extinct, rediscovered in the Indian ocean in 1938? Could I buffalo. I knew I knew it, it was on the tip of my tongue. Cough cough. Despite my pathetic performance our team managed a dignified second after all, thanks, in part, to knowing in which year Queen Victoria died.

Flushed with success and a surfeit of carbon dioxide I made my way home with Polly. To my horror and confusion I found that I could barely steer the wheelchair. It seemed to take forever to travel the route we have walked (wheeled) countless times before. My balance was completely shot and I couldn't get my hand in the right position to use the joystick. Fortunately Jason, a friend, team mate and para-medic, had offered to help me since we had had to cancel the carers that night. My thanks to him and Polly or I would never have made it to bed and the reassuring hum of the BiPap.

Now what? Oh yes, answers, as if you need them. Thanks to Geoff who compiled the quiz.

Mercury. Edward Jenner. Red Orange Yellow Green Blue Indigo Violet. E.H. Shepard. Watt Tyler. The Impressionists. W.

Robert the Bruce.

R. J. Mitchell. 1901. And the bloody fish was a Coelacanth, of course. (But you knew that, didn't you.)

Thursday, 7 May 2009


My apologies for the lack of posts this week. Frankly, tapping these missives out letter by letter puts me off writing unless there is something I particularly want to tell you about. This has been a slow week.

Yesterday I was visited by Gina, a community physiotherapist. Usually I have little truck for physiotherapists, who in my experience want to inflict pointless and painful exercises upon me, or wish to pummel me on the chest, ostensibly to clear mucous from the lungs, but in reality to satisfy their own sadistic tendencies, hammering away whilst saying, “there, does that feel better?” Physiotherapy is, generally speaking, a discipline that wishes to inflict pain and suffering with the intention of easing it. So it was with resignation rather than with anticipation that I greeted Gina.

Gina turned out to be quite nice. I think I should make it clear that this sentiment was in no way influenced by the fact that she was a young, blonde, bronzed, pony-tailed Antipodean who by all rights should have been dressed in a swimsuit, running along Bondi beach with a surf board tucked under one arm and with a can of shark repellent held at the ready, preparing to plunge into the foaming sea. No, that thought never entered my mind. Obviously. Not for a second. No.

Gina prodded and pulled me in the manner typical of her profession. She examined ceiling hoists, profiling beds and shower chairs, pronouncing herself unsatisfied at my lack of support, both from certain other services and, less figuratively, from my wheelchair seating position. Polly watched with an amused expression as I tolerated being poked and stretched with uncharacteristic good humour, arching her eyebrow as I said “No, that hardly hurts at all,” as my feet were being twisted into an unnaturally natural position.

Later, with the theme tune to Neighbours unaccountably running through my head, I thought about writing a post for this blog, but then thought, no, I'm too exhausted by my exertions at the hands of a health professional to manage right now. They'll have to wait until tomorrow.


Friday, 1 May 2009

It Should Have Been Me

May 1st is Blogging Against Disablism Day, a highlight in the disability blogging calendar, if you can imagine such a thing. Here is my contribution.

There I was, flicking through the pages of Mobilise, a magazine promoting mobility for disabled people, something I'm sure we'd all agree is a good thing. (Promoting mobility I mean, not flicking through the pages of a magazine. We disabled folk are notoriously sedentary.) Anyway, there I was, gazing at adapted vehicles with sexy aluminium ramps and scooters with five wheels for extra stability, when there between an article about a kid taking his local bank to court over access issues and one about Naidex '09, a conference promising innovative features, new products and educational seminars (wow!), there was an article that might change my life and give me a bite at the reality TV cherry. BBC 3 are looking for wannabe wheelchair dancers. Sign me up.

“BBC 3 seeks wheelchair users”, the article read. “Would you like to try something new?“ it continued. “Fancy learning to dance?” Would I ever! “If so, BBC 3 would like to hear from you. We are searching for wheelchair users to get involved in an exciting new series.” This could be my breakthrough moment. Dancing on wheels. I had Polly phone the contact number straight away.

The conversation started well. I have a history in the the arts, I'm married to an actor for crying out loud. I am disabled and I use a wheelchair! I'm articulate. Okay, my speech is a little bit slurry but the subtitles would be a hoot. The nice young man at the television production company was starting to sound excited. He obviously was beginning to think he had found his Ray Quinn, or at least his John Sergeant. (Sorry if you are reading this outside of the UK, you'll have to take a guess at the cultural references.) Polly told him she assumed they were looking for couples and was preparing to assure him she could hoof with best of them when he told her they intended to partner the wheelchair dancers with able-bodied professionals. I felt disappointed for Polly but stoically imagined myself partnered with some nubile, Lycra-clad beauty, prepared to perch sensually and artistically on my foot-plates for the sake of entertainment. I heard Polly tell him she imagined I wouldn't mind too much but that she hoped my costumes would be particularly lurid and skin-tight so as not to be out shone. “He'd like lots of sequins and colourful feathers,” she assured him whilst smiling at me malevolently.

I was mentally preparing to sign on the dotted line and was jiggling my joystick to a Latin rhythm in anticipation of reality TV fame and hoping that readers of this blog would vote to keep me in week by week, when I was dealt a devastating blow. I heard Polly say, “an electric wheelchair, a Samba Quickie... Oh.” I could tell from her face that she was not hearing good news. “No, he can't use a manual chair any more.”

After she put the phone down she explained that, simply put, I am too disabled to appear on a disability based reality TV show. How unfair is that? I mean, my chair is named after a dance! But oh no, they want able-bodied disabled wheelchair users who can whirl and twirl on two wheels and who don't need recharging after every Foxtrot and Argentine Tango. The show will never amount to anything without me, mind you. My Bosa Nova on four wheels would have been a televisual water-cooler moment in history. It hurts me to know you'll never see it.

But then, to rub salt in the wound, Polly was told they are hoping that wheelchair users will come and be in the audience. I ask you! Who would want to see a bunch of cripples roll around a dance floor when one of them isn't me? I'm thinking of pitching my own idea for a reality TV programme, Wheelchair Death Race, where wheelchair users slalom down a steep hill knocking over celebrities en route. Now that's entertainment.